Well, good evening, everyone.

Thank you so much for joining us.

What a powerful and real film.

I enjoyed hearing and seeing some of the comments from you all, just how certain moments may have resonated with you, certain things in that film.

And so I'm excited just to continue that conversation here tonight.

My name is David Hurst.

I'm a senior producer with PBS North Carolina and one of the hosts of one of the shows, NC Impact.

And again, thank you so much for joining us for this special preview screening of Matter of Mind, My Alzheimer's.

PBS North Carolina, together with the Alzheimer's Association, the Duke and UNC Alzheimer's Disease Research Center, the Duke University School of Nursing, and the North Carolina Registry for Brain Health, proudly present this content and the panel discussion, and really just giving you an opportunity, a safe space to connect with others living with Alzheimer's or caring for family members with Alzheimer's.

I know at times some moments in that film may have been difficult to watch and the conversation may be tough as well.

We all have different perspectives and opinions.

So please show kindness and respect during this conversation when entering questions and comments in the chat feature.

But before we dive into this important conversation, a few quick housekeeping items.

First, please post your questions for the panel in the chat section to the right of your screen.

We've got about an hour, so we'll try and get to as many questions as possible.

But we've got some great experts here who we'll introduce to you in a minute, but they're excited to hear some of your questions and comments.

The second, please tune in to watch the complete broadcast-length Matter of Mind, an Alzheimer's documentary when it premieres on PBS North Carolina.

That's on Monday, May 5th at 10 p.m. And please be sure to tell your family and friends to tune in as well.

You can also stream it anytime on May 5th online and on the free PBS app, of course, anytime after that as well.

Next, we want to hear your feedback about the film and this event.

So please weigh in.

You can text "caregiving" to 415-223-8013 for a survey or click on a link listed in the chat.

We'll provide that link several times, that text number, so you have plenty of access and opportunity to weigh in.

You'll also receive an email next week with a link to the recording of tonight's panel discussion.

We'll also give you resources, when and how to watch info, and of course, that audience survey.

And bonus, if you fill out the audience survey, you will be entered into a chance to win a $50 gift card provided by Independent Lens.

So thanks again for joining us.

Also, as much as this film is really about understanding Alzheimer's diagnosis and the weight and burden of caregiving, we also plan to talk about some of the medical facts, research resources, and also explore the more human questions of Alzheimer's and how it affects someone's self and their purpose and their life in general.

We'll also talk about the caregiving and the toll that this disease takes on family members and their relationships.

We saw some of that in the film.

I'm sure some of you have lived experiences, so excited to chat more about that.

But we'd like to introduce our esteemed panel of experts who will discuss all of that and more.

Tonight's special guests are Dr. Kathleen Welsh-Bohmer.

She is the Director of Outreach and Recruitment Corps of Duke and UNC ARDC, a professor in psychiatry and behavioral sciences, professor of neurology and neuroscience, and a member in the Duke Clinical Research Institute.

We also have Lindsey Golden.

She's the Director of State Affairs for the Alzheimer's Association in North Carolina chapters.

We're also joined by Cate Mills.

She's a volunteer, advocate, caregiver, and wife of Alzheimer's patient.

She's on her screen.

Next to her is Carter Grine.

He's a 58-year-old male with a younger-onset Alzheimer's diagnosis.

And last but certainly not least, we've got Darina Petrovsky.

She is an assistant professor at the Duke University School of Nursing.

Thank you all for being with us this evening.

We have a lot to cover.

Dr. Petrovsky, let's first start with you.

I'm sure many people are curious what the difference is between Alzheimer's and dementia.

Can you break that down for us?

Sure.

Thank you for having me on.

The simplest way I can describe it is that dementia serves as an umbrella term, and it is a syndrome.

It is a collection of different symptoms, which include memory loss, difficulty with processing new information.

And Alzheimer's disease is one of the causes of dementia.

There are many other causes, so I actually like to use the plural term "dementias" to remind myself that there are many different kinds and causes for dementia.

So hopefully that's helpful.

Absolutely.

Thank you for that distinction.

Dr. Wesch-Bohmer, I'm curious, can you talk a little bit about what kind of clinical trials are going on around these types of diseases, what that looks like, and how maybe someone might get involved if they're interested?

Yeah, sure.

Thanks, David.

So currently there's about 123 different drugs that are in development, different stages of development in clinical trials.

And so we're very hopeful that we're going to be seeing additional therapies becoming available, hopefully in the near future, to help patients who are struggling with Alzheimer's and related dementias.

So how do you find a clinical trial?

That's always a big question.

A great place to start is actually to go to the Alzheimer's Association's TrialMatch website.

TrialMatch is a tremendous resource.

You can sign up to be in TrialMatch if you want to get matched to a clinical trial in your area.

But you also can use their option.

They have a connection option as part of TrialMatch that takes you to what is called their Care Box.

And it takes you to information about the different studies that are going on.

So you don't actually have to join this matching service, but you can just learn about the different studies.

And there's a toll-free number there if you'd rather talk to a person and have your questions answered.

So that's a great place to start.

And then if you want to really dive in and understand more about the nitty-gritty of a particular trial, you can go to the federal website called clinicaltrials.gov, and you can learn all about what a particular study is going to do and how long it's going to run and all those kind of details.

And then finally, if you want to just learn about research that's not just clinical trials, but there are lots of other types of research that's going on that are designed to improve diagnosis, to improve care, to improve management.

And if you want to learn about all of those different studies occurring here in the state of North Carolina that you might want to get involved in, I would advise you to go to the North Carolina Registry for Brain Health at ncbrainhealth.org, and you can learn all about the studies that are going on here in the state of North Carolina in case you want to join.

Well, thank you for those resources.

I understand we've got people joining us from all over the country.

I think I saw one person joining us from California today, so I'm sure people will be interested in learning more about what's going on in their area and their communities, so thank you for that.

Carter and Cate, I want to pivot to you guys.

Thanks so much for joining us today and sharing a little bit about your stories and lived experience.

I want to start with you, Carter.

What has this experience been like for you so far, from initial symptoms to diagnosis to today?

What's it been like for you?

There's been a lot of fear, and there are medicines that were coming out, but they're not all the way to, like you said, there are going to be better medicines and things like that.

But I also like to talk to other people, letting them know that everybody is still a person.

Yeah, and I like to help everybody.

We go around the world, it seems like, and we did Australia, so I mean things like that.

We're going to just try and make the best we can, and we're making -- Yeah, make the most out of every day.

Yeah, that's what I'm trying to say.

We just try to make the most out of every day.

Yeah.

Absolutely.

It's a great perspective to have in the midst of so much uncertainty and fear, as you alluded to.

Cate, I'm curious, what about for you?

What's this experience been like for you as a supporter, as a caregiver?

Yeah, so because Carter -- really, we started this process very early on.

Carter has early onset and meaning -- or younger onset Alzheimer's, so he was much younger when the symptoms started.

But also we were lucky to -- because Carter was really proactive in terms of coming to terms with having a problem and being willing to seek out help, and then taking the next step of really being willing to talk about it and engage in advocacy.

So this has made all of this a million times easier on me because he's willing to -- he knows what's going on, and he's willing to not only help himself but help others.

So I would say in our house there's a lot of love and a lot of laughter because, obviously, there's also a lot of frustration for both of us.

But just like the people in the documentary, we really enjoyed seeing them and how they -- you could see all the love and the laughter that they focused on because you really have to keep that central in our lives so that we can get through these hard times and focus on what's really important.

We've also had, of course, the support of our family and friends and the new friends we've made, like Lindsey, through the Alzheimer's Association and all the different organizations we've gotten involved with because of our experience with Alzheimer's to help us along the way.

Awesome.

Well, thank you again for being here.

And you teed up Lindsey pretty well because she's next up.

Lindsey, they mentioned support a little bit.

What kind of state and federal supports out there or initiatives, policy initiatives, are there out there to support caregivers and those suffering from this disease?

I think you may be on mute.

We'll see if we can get Lindsey.

All right.

We'll come back to you, Lindsey.

Don't worry.

In the meantime, Dr. Petrovsky, I'm curious.

I want you to talk a little bit about some of the traditional and nontraditional methods and therapies for treating this disease.

What's shown promise in helping to manage or lessen the symptoms of Alzheimer's disease?

Yeah.

Thank you for that question, David.

So while we're -- as I feel we're continuing to make progress towards finding a cure and towards finding a drug that will not only slow down the disease but help with the symptoms, unfortunately we're still relatively limited in that regard, but continuing making good progress, especially in the last few years.

In terms of the nondrug approaches, we have several promising interventions.

I think as it feels we're still thinking about what is the best approach for the person, what is a tailored approach for the person living with dementia.

And I would categorize interventions into maybe three buckets.

Interventions that -- and approaches that target persons living with the disease, living with dementia, and this includes things such as meaningful activities or ways to help individuals manage their symptoms.

So we call these behavioral symptoms, and they can include some of the things that we saw in the movie, such as anger or aggression or wandering.

These are generally sort of looked at as negative behaviors.

In addition, this sort of -- the second bigger bucket are interventions focusing on providing caregiver support.

So a big theme of the movie and the screening, what we saw are some of the things that caregivers struggled with.

So these included, you know, financial difficulties, feeling like they're alone, like being on an island, right, not getting support, the sort of identity and relationship loss that they had with the person living with dementia, in addition to some of the, you know, lack of qualified caregivers and lack of workforce in this area.

So I would say that is the second sort of biggest bucket.

And the third bucket that we -- of interventions that are now on the horizon are thinking about care coordination and thinking about, okay, if you are living with dementia, you're also living with other chronic conditions.

So in our very segregated medical system where we go to one specialist and see them for symptoms or a problem, and then we go see another specialist and see them for a different set of problems, how do we coordinate that care between different specialists in order to really help and treat person as a whole?

And myself being a nurse, that's -- most of my training has been thinking about how do we coordinate and provide the most holistic care.

And so I would describe those as the three main buckets for non-drug interventions that we have that we can use in addition to currently available drugs.

So together, hopefully, we're able to provide the right approach to the right person.

>> And that's helpful to think about things in those three buckets.

Lindsey, I want to try and circle back to you because that second bucket that Dr. Petrovsky talked about was the caregiver support.

Can you share a little bit about what kind of state and federal policies are aimed at supporting those caregivers?

>> Absolutely.

Caregiver support is a huge priority for the Alzheimer's Association.

We have advocates across the country working to advocate with their legislators.

So on the federal level, we have introduced the Credit for Caring Act.

This is a bipartisan act aimed at supporting caregivers through a non-refundable tax credit.

So these caregivers are spending upwards of around $12,000 a year out of pocket.

Most caregivers can't afford that, so it would help offset some of those costs.

So we encourage anyone to get involved in that priority by visiting allsimpact.org.

In North Carolina, we are working with our state legislators to increase support for project care.

Project care is an amazing dementia-specific respite program that we have in our state.

Dementia caregivers can get respite care and support to help offset some of the costs that they experience as a caregiver, but then also lessen the burden of caregiving.

Caregiving is extremely challenging in all aspects, financially, emotionally, mentally.

So giving caregivers a break is really crucial.

But we've seen the number of caregivers skyrocket in our state, but the funding and support hasn't.

So we are looking to increase project care funding to over $2 million this year in North Carolina.

>> And Dr. Walsh-Bohmer, I want to come back to you and talk a little bit more about brain health research.

How important is this kind of research for treating Alzheimer's and really learning what drugs and remedies can help treat folks with a diagnosis or even hopefully prevent it?

>> Yeah, really good question -- or questions, actually.

You know, I think getting involved in research, it's really important for all of us to consider it.

And the reason it's really important is it's going to make our treatments and our therapies better.

The more people who get involved, you know, we all come to our situation with a cognitive problem or any kind of medical problem with our own health history.

And so everybody is different.

And if we're going to develop therapies that are going to work in all people and are going to be known -- well, where we will know their safety profile and in which groups, which drugs will be most effective, it's going to help us to develop better treatments for all and help us to target our treatments appropriately to the right populations that require a certain kind of treatment versus another kind of treatment.

So it really helps us to improve the approaches that we're taking to treatment.

And it also allows people to get involved and have their voices reflected as we develop different therapies.

So it's one thing to develop treatments that will be safe and effective, but can we afford them?

Are they feasible?

And so by getting involved in research, there's a voice that the participant or the patient can have about what works and what doesn't work for them.

And that's so important to consider as we move forward to introducing new treatments.

>> Absolutely.

I'm starting to see some questions come in from the audience.

We'll get to those in just a minute.

Please feel free to keep them coming.

We'd love to ask some of our panelists your questions.

But first, Carter and Cate, I want to come back to you guys.

Carter, what are some of the challenges you've experienced getting a diagnosis and getting access to treatment, especially as someone who was in the early stages of Alzheimer's?

>> Can you hear me?

Can you hear me?

The first challenge is deciding to get evaluation.

Once that decision is made, it takes a long time to get an appointment.

It took me a year and a half to get an MRI and change to a formal diagnosis.

>> Wow.

>> I was -- the other thing, too, I specify again, I think we're going to have a lot more better with this power.

But it's just been a long, you know, pathway.

>> Carter was diagnosed in April of 2023.

And the FDA approved the new medication, Lecanumab, in July of 2023.

And so we were very on top of trying to get him into treatment.

He wasn't in any of the clinical trials because that was long before he was diagnosed.

But it still took about six months to get from the point of the FDA approval to the time that he was able to start treatment.

You know, and we were really on the front edge of that process.

And we understand that that's going to be more challenging.

But that's part of why we really got involved with advocacy because we felt like we had all the privileges of time.

I'm not working.

Carter had already retired.

We had the privileges of time.

And Carter is a physician, a career physician.

He has connections in the medical world.

We had the resources to be able to look into how to get the best care and access it financially.

And even with all of that, it was absolutely a Herculean effort.

And we just felt like if it was that hard for us with all of the options, all of the opportunities that we had, then for most people it would be something that you would -- for me anyway, I would have given up a long time ago.

So that's what kind of fuels our fire behind hoping to make this an easier process for people in the future so that they can have easier access to these medications.

It can really be -- really change our outlook on what's possible in the future for Alzheimer's.

Absolutely.

I mean, despite all the challenges, there is some hope out there with all the innovation going on, with all the technological advances.

So that's got to be exciting, especially being on the front edge of that.

That's got to be an exciting thing.

I do want to get to some questions that are coming in from the audience.

Dr. Petrovsky, I'll throw this one toward you.

But someone asked about diet, keto.

Does any diet in particular work toward slowing the progression of this disease?

I don't think we have quite a definitive answer to that question.

One of the phrases that I keep hearing in sort of brain health community is what is good for our heart is good for our brain.

And that includes both lifestyle choices, access to quality, fresh food.

And there is a connection between perhaps insulin resistance and how insulin is processed in our bodies and different types of dementia.

So while there is some evidence to suggest that certain diets can prevent or maybe even help with the symptoms, I think there's a lot of ongoing research to show -- to provide proof, to provide for that question.

So stay tuned.

Some of that research is actually going on in our backyards, such as Wake Forest University, as well as at Duke.

And so it is a very timely question that hopefully we get the answer for soon because diet is something that we can all stand behind.

Right?

We all eat food.

We all need food.

We all hopefully have access to quality food.

And so this would be -- if shown efficacious, this would be a tremendous opportunity to prevent or slow down this disease.

>> We will stay tuned.

Thank you for answering that question.

Dr. Welsh-Bohmer, I've got one that I'd like to pose to you.

Someone asked about relocation.

Should a caregiver move, transplant their patient, the loved one, if it's convenient for them?

And particularly we're curious about does that further damage or confuse the patient with Alzheimer's?

>> Yeah, that's a great question.

You know, I think sometimes there isn't really a choice, and a caregiver has to move someone to be closer to them in order to provide the care.

I think, you know, we do the best that we can.

And I think one of the things that we really try to strive towards so that that transition goes smoothly is to try and provide some kind of consistency to the everyday lifestyle, you know, some predictability to the schedule.

And also to be, you know, present and include the person in that decision making as much as possible.

And we saw in the film how moving was disruptive in the one case between Andrea and her mom, Christy.

And so that can happen as things change.

And as people get adapted to their new environment, that can start to settle out.

So it really is a personal decision about trying to be there and to plan ahead and to think ahead of what's going to happen perhaps a couple of years down the road so that the person has time to adjust to that change while they have the capacity to really embrace it and try and be a part of the decision making that goes into that move.

And I know that Dr. Petrosky probably has some thoughts about this as well.

>> Yeah, that is a very complicated question.

In my own personal experience with family members and the patients that I cared for, we do tend to see that anything that requires a relocation, even for a temporary amount of time.

So when you think about this, for example, natural disasters, right, we see an increase in natural disasters, which often requires a relocation of individuals living, let's say, in nursing homes to different places for the time being.

And we see an increase in behavioral symptoms.

So we see more confusion.

We see increased need for medications to help with those symptoms.

So there's something to suggest that once we change the environment, this can have negative consequences for the person with dementia.

And so I was speaking with somebody who works with me at the School of Nursing, and they talked about how they chose to have their relative remain in the state many states away, given that they have the support and they are sort of embedded in that community and have the right amount of support for that person.

So they chose not to relocate that person, but they're open to it should sort of those resources cease to exist.

So I think it's an ongoing conversation and ongoing reassessment, right?

And often it's a complicated decision.

It may involve several family members, cost of living adjustment, finding the safe place for the person to live.

So it's not a very straightforward question.

And as a takeaway, we do see increase in confusion and negative behaviors once the person is moved to a different space.

>> Well, thank you both for your insight on that topic, and thank you to the question.

I did get a question about resources in North Carolina, so I'd like to pose this one to Lindsey.

They're asking, are there any resources in North Carolina to educate people on lifestyle changes to improve brain health and reduce the risk of Alzheimer's?

>> Absolutely.

ALZ.org will be a great landing page that is full of resources in both English and Spanish and some resources even in Chinese to support these topics.

So we have a program hosted at the Alzheimer's Association called Healthy Habits for Your Brain.

It breaks down really manageable things that you can integrate into your life to hopefully lessen your chance of having cognitive decline.

We very much hear the same thing that Dr. Petrovsky mentioned, what's good for your heart health is good for your brain health.

So taking those into consideration.

We also have the term that's been a lot more frequent in the Alzheimer's space, modifiable risks factors.

So what are some things that you can do in your life?

So exercising more, eating healthier, those fall into the healthy habits for your brain category as well.

But some things that you can do in your daily life to help make sure these things are integrated.

So there are resources.

There are free educational programs that we can come share with your groups that you may be associated with.

And all of these are aimed at supporting our community.

>> Awesome.

Thank you for sharing those resources.

We did get another brain question.

So Dr. Welsh-Bohmer, I'm coming to you.

They're asking, is it true autopsies are the only way to research a brain?

>> So the answer to that -- the simple answer to that question is no.

That's not the only way that we learn about Alzheimer's disease.

It's one way of confirming that, in fact, the dementia we saw in life was due to Alzheimer's disease or to another disorder.

But in life now, we've developed very good technology and tests that help us to make a diagnosis in life very reliably.

So we have different imaging studies.

So we have what's called PET or positron emission tomography studies that look at what's going on within the brain and can measure the proteins that are abnormally collecting in the brains of patients who have Alzheimer's disease.

And that helps the physician then to visualize the changes in a patient that might be due to Alzheimer's disease or perhaps to a different disorder.

We've also developed tests that allow us to measure those proteins in the cerebrospinal fluid.

That's the fluid that coats the brain.

And we can look at whether or not there's elevations in the proteins that are involved in Alzheimer's disease.

That involves a lumbar puncture or a spinal tap.

And so it's not something that a lot of patients like to go through, but it's a very reliable way of diagnosing the condition in life.

And we're making a lot of progress right now in blood tests that are being developed for trying to measure these proteins with a blood draw.

And if that happens, and we expect that it will, that will really be a helpful tool for diagnosing Alzheimer's disease in life because it's scalable.

It can be used out in the community and it can be a first step for getting into a reliable diagnostic pathway for this condition.

So autopsy is not the only way that we do research or clarify a diagnosis.

>> Good to have someone asking as well what test is best to get a true Alzheimer's diagnosis.

So you answered two and one right there.

So well done.

We also have people asking about genetics and what role genetics plays in Alzheimer's.

Like if your parent was diagnosed, does that increase the likelihood of you getting diagnosed as well?

Let's see.

I think I want to throw that to Dr. Petrovsky, but anyone else feel free to weigh in after she does.

>> Sure.

I'm happy to take a stab at it.

So yes, generally speaking that we know that there are certain genetic markers, for the lack of a better word, that if you have mutations in certain genes that, yes, you're more likely to be diagnosed with Alzheimer's disease.

Let's use that as an example.

However, and that's a big however, most of the risk factors for Alzheimer's disease are actually non-genetic related factors.

There's a beautiful report published by The Lancet that has come out, I believe, last year in 2024, that talks about that most of the risk factors up to I think, what is it, 60, 70% Kathleen?

I forget, is actually non-genetic related, meaning that things that we put in our bodies, how we move around the day, the neighborhoods where we live in, how much sleep we're getting, all these things actually are more likely to predict your risk of developing Alzheimer's disease.

Another caveat to why studying the development of this disease can be quite tricky is that not all individuals who carry the mutations and those genetic markers will actually develop the symptoms of Alzheimer's.

That's what makes it so hard to pinpoint and predict the progression of the disease.

And what makes it even more complicated is just because you have those genetic markers doesn't mean you're going to move or experience symptoms at the same rate as somebody else who has partial or some of those genetic markers.

So it's very complicated.

That's why it's now we're really coming at the intersection of how genes interact with our environment.

And we think that's really where those risk factors come from.

So it's not as simple to say that just because you have those biomarkers, you're definitely going to develop the disease.

Yes, you are at a higher risk for it.

But there's other things that we can do right now that we have control over that can actually help us delay the diagnosis and maybe even help with the progression of the symptoms.

Kathleen, anything to add?

Yeah, and I think you did a really great job of explaining it.

I think there are certain genes that we inherit from our parents that can increase the susceptibility or the risk for developing the disease, as Dr. Petrosky was saying.

But about 45% of the risk is due to environmental or can be attributed probably to environmental factors.

So we always worry about it when we see a parent being affected as to whether or not we're also going to be affected.

But these genes, again, increase the risk, but they don't determine that you're going to get the disease.

So it's a lot like thinking about having elevated cholesterol might put you at a higher risk for having a heart attack or a stroke.

But just because you have elevated cholesterol doesn't mean you will have a stroke, doesn't mean you will have a heart attack.

It's just associated with a higher risk.

Similarly, if you inherit a gene that's a risk gene for Alzheimer's disease, it puts you at higher risk, but it doesn't mean you're going to develop the disease.

And these other things that Dr. Petrosky was pointing out, and also Lindsey from the Alzheimer's Association is pointing out these other contributions of diet and lifestyle choices and other conditions that you might have, all of those things kind of are an interplay that can increase the risk for developing the disease.

So there's a big part of it that we think is probably preventable, and we're trying to focus in on how we can try and optimize the possibility of delaying onset of symptoms and slowing progression of disease by focusing on these factors.

>> And Dr. Welsh-Bohmer, I want to stick with you for this follow-up.

Someone's asking, "What definable symptoms do we look for when suspecting another type of dementia besides Alzheimer's disease?"

>> Yeah, that's a great question.

So often with other dementias, like there are dementias called frontal lobe dementia or frontal temporal dementia, those often present with personality changes as opposed to memory changes.

So Alzheimer's usually presents with forgetfulness and difficulty remembering recent events.

With these frontal lobe dementias, there's this personality change that can occur, so you see people becoming -- where their memory may actually be fine, but they become much more aggressive or just irritable or just making poor decisions.

So that can be one tip off to a different type of dementia.

With Lewy body dementia, which is in the family of Parkinson's disease types of disorders, we can often see changes in the sleep-wake cycle.

We can see problems with perceiving the environment correctly or visual changes that occur.

So there are symptoms that occur that are not memory-related that appear with these other types of dementias and can be a tip off that something else might be going on.

>> Got it.

Cate, I want to come to you for this one.

We've got a fellow caregiver asking a question in the comments.

He or she says, "Both parents have Alzheimer's.

Mom is now on the stage of 'All About Me.'

How does caregiver speak to the mom?

What should she not say?

What should she say?

Do we correct them?"

What's your advice to another caregiver who might be going through something like this?

>> Well, it sounds like if this caregiver has two parents that are going through Alzheimer's, they probably have as much knowledge about this as I do.

It's very -- you know, one of the first rules of working with people with Alzheimer's given to caregivers is to never argue.

But as anyone who's ever had a parent, a child, or a spouse, we know that that is not a logical -- that's not a reasonable expectation.

But it's a good thing to strive for, I think, for all of us and all our relationships.

So I would just say it's -- I think that speaking to -- for me, we still -- I know and I'm sure this caregiver as well tries to guide with safety in mind and with their best interests in mind, but also making sure that respect and love is at the front of all of our interactions, because that's what we want everyone to get out of the purpose of our interactions.

But, you know, that specific question, "Do we correct someone?"

That's a really tough one, because I guess we'd all like to say we're perfect and not necessarily do that and engage in that conversation, but realistically, that's going to happen.

So I would just say make sure you're -- give yourself some forgiveness and love and keep going forward the best that you can.

>> Easier said than done, right?

We got one question.

I'm curious, your take and the Alzheimer's Association, if they have a stance on this, but they're asking the annual Medicare physical screens for Alzheimer's, can you advise about the validity of this type of screening and what is the value that indicates you need further screening?

Any thoughts there?

>> Yeah, absolutely.

And I think that's such a great question.

It really falls into a theme that we try to educate as many people as we can.

Early detection and diagnosis is key to managing a dementia diagnosis.

For the first time in the last couple of years, we have treatments that modify Alzheimer's disease.

So Carter is on one Lekembe, and that aims at slowing the progression of Alzheimer's disease.

So it is really important if you're experiencing signs of cognitive decline in yourself or a loved one to have those conversations with your physician.

And in those yearly Medicare conversations, that's a great opportunity to check in.

But there's also other ways to go about a diagnosis.

If you don't feel like that conversation through the Medicare screening is enough, you can get biomarker testing like Dr. Welsh-Bohmer and Dr. Petrovsky talked about.

Biomarker testing is really a great way to understand and diagnose Alzheimer's now.

And we are actually working on addressing coverage for biomarker testing for our population right now.

We have a bill that was introduced in the North Carolina General Assembly this session to ensure access to biomarker testing.

So this would make sure that as we have new tests come available, the blood test would be incredible for rural North Carolina, that people can actually access it.

So if you are experiencing issues or challenges with possible memory loss, the earlier you can have a conversation around diagnosis with your provider, the better your experience will be.

>> And, Lindsey, one more question came in for you.

I know you mentioned some resources earlier, but someone asked just overall, where's the best place to find support resources for caregivers specifically?

Where would you -- >> There are so many amazing resources that we have.

At ALZ.org, we have an entire page dedicated to caregiver resources specifically.

Again, these are both in English and Spanish.

And look to really meet people where they're at and cover a wider range of caregiving topics, anything from managing caregiver burnout and stress to how to have difficult conversations with the person you're caring for.

Maybe you need to have a conversation about taking keys away and your loved one can no longer drive.

Those are really tough conversations to have.

Maybe you want to know what questions to ask a provider or your doctor when you're going into the conversations.

You can find those there.

But the Alzheimer's Association in conjunction with AARP has what we call a community resource finder.

So you can go to communityresourcefinder.org and type in your zip code, and it will pull up a range of resources to help you.

Maybe it can be where our adult daycare centers, where physicians, different resources and programs you can tap into.

It's an amazing resource, and that is nationwide.

So you do not have to live in North Carolina to take care of that.

>> And, David, can I jump in on that one?

>> Yeah, please.

>> I think it's also -- there are a lot of wonderful online resources.

I think it's also important to find within your community the support programs that are available locally.

A lot of communities, even smaller communities, have community support programs where you can make those individual connections, connect to other people having these same experience or similar experiences, and learn from their challenges and their resources that they have found that have been helpful to them.

I think that making those personal connections, whether it's online on a Facebook group or if it's in a support group locally, I think those are really game changers because they enable you to ask the really specific questions that you're concerned about and get really specific answers that can help your specific situation.

Because I think each situation in which we deal with dementia and Alzheimer's specifically is so unique.

>> I want to pose one more question to each of you.

First, Dr. Welsh-Bohmer and Dr. Petrovsky, the one thing you want folks watching and listening this evening to know about Alzheimer's or know about these forms of dementia, just the disease in general, what do you want people to take away?

What do you want people to know?

Dr. Welsh-Bohmer, you can kick things off.

>> I would say that there's hope.

Particularly in the past year, we have seen so many amazing developments in both the diagnosis and the development of treatments for Alzheimer's disease that I'm very hopeful for the years ahead that we're going to have some real solutions.

I would say hope that all the research I think is beginning to now pay off.

>> Sure.

I think I echo Dr. Welsh-Bohmer's point.

In my own work, I'm extremely touched when a caregiver reports to me that they made a significant sort of connection with a person living with dementia.

And you saw some of that in the movie.

This need to belong, this need to connect, this need to feel like an equal partner or a husband or wife or sister, brother.

And that's what my work really focuses on.

And so while we acknowledge that most of the, you know, the research focuses on how to decrease the negative symptoms of dementia in my own work, we really try to focus on how to amplify the positive aspects of caregiving and that personhood that still exists.

And so it's still there.

I think it's up to us as caregivers, as professionals to find those moments of connection.

And, you know, we have tools now in place to help us connect.

And one of those tools that you saw in the movie is the music when you saw that last aya sing a song.

And so that's what drives me and my research forward.

And that's what kind of keeps me going and in working with those living with dementia as well as their caregivers.

>> Awesome.

Well, thank you both for wrapping us up on a theme of hope and something to look forward to just despite all the challenges that these diseases have on us and our loved ones.

Final question for you, Carter and Cate.

Cate, as an advocate and a caregiver, you talked about earlier some of the support and resources that worked well that really helped you.

What do you think is currently lacking or what could significantly improve your ability to both support yourself and your husband?

>> I think, yeah, I think after -- >> Fear is a thing that helped what I see talking and everything.

And they have been -- they don't want to take any medicines regarding with that.

And I say that would be the thing that I would think would be that.

>> So when he talks about like the fear that people have, so I think one of the biggest things people need is I think that programs like this are wonderful because they're helping to kind of normalize to the best of our abilities the experience of what's happening and to help encourage people to seek out help if they do have fears about their own brain health or about their family members' brain health.

>> Yeah.

>> Because fear holds a lot of people back.

I also think like the work that Lindsey is doing and that we try to help with on the state level and on the national level is the reality of needing some kind of structural funding to help caregivers to be able to be able to be good caregivers to the people that need that support.

And I think that the majority of people, the idea of holding a full-time job and being able to be a full-time caregiver like we saw in the movie is not possible.

It's simply not possible.

So increasing funding for that I think would be a real game changer.

>> Awesome.

Well, thank you both for sharing your experience and your advocacy around this very important work.

We appreciate it and joining us in the conversation.

They teed you up well, Lindsey, for your last question that's about funding.

Talk to us just about how much every dollar helps in raising awareness and fighting these diseases.

How much does individual giving and fundraising really make a difference?

>> Absolutely.

I think funding is crucial to understanding this disease more.

We've talked about the research and the progress we have made in understanding this disease, and that is only available because we have had advocates across the country talk to their members of Congress and make sure this is a priority.

We hope this continues, and now more than ever, we encourage you to use your voice on this.

You can visit ALZimpact.org to advocate.

But when it comes to funding and how you can get involved in our communities, we have incredible events called Walked and Alzheimer's that take place.

We have over 600 events that take place in the fall, and they are fundraisers to fund our local programs, care, education support, all of our support and educational efforts, as well as go towards Alzheimer's research.

So we encourage you to get involved with those.

You can find more information on that at ALZwalk.org and get more information on how to support larger funding efforts.

>> Perfect.

Thank you, Lindsey.

Well, unfortunately, we are out of time for this evening.

It's been a great conversation, and thanks, all of you, for joining.

Thanks to the audience for asking some awesome, awesome questions for our wonderful panelists.

Before we go, I've got to give all my thank yous.

Many thanks to our special guests, Dr. Welsh-Bohmer, Dr. Petrovsky, Cate Miller and Carter Grimm, and Lindsey Golden.

Many thanks to our ASL interpreters, Valerie and Sarah.

Thank you to our event partners, Alzheimer's Association, Eastern and Western North Carolina Chapters, the Duke and UNC Alzheimer's Disease Research Center, the Duke University School of Nursing, and the North Carolina Registry for Brain Health for partnering with us on this important discussion and screening.

Thank you to the Alzheimer's Association, Eastern and Western Carolina Chapters for their assistance with tonight's event, their promotion of the event, and all they will continue to do for families and patients living with Alzheimer's.

And, of course, thank you all, the viewers, for logging on and participating in the conversation.

Again, please be on the lookout for that email you'll receive next week.

It'll contain the link for tonight's recording, as well as the discussion, info, panelists, a link to resources, and the audience survey text option, as well as information about when family and friends, when they can watch and stream "Matter of Mind, My Alzheimer's."

It premieres on Independent Lens on Monday, May 5th at 10 p.m. on PBS North Carolina and on the free PBS app.

And, of course, to ensure that PBS North Carolina continues to bring you popular PBS shows, impactful documentaries, balanced public affairs, informative how-to programs from Lifestyle Shows, Roodle, our 24-hour kids channel, and free screening events like this one, I hope you're inspired to make a tax-deductible donation to PBS NC safely and securely at pbsnc.org.

If you're already a member, we appreciate you.

Also, please consider supporting tonight's event partners, that's Alzheimer's Association, the Duke and UNC Alzheimer's Disease Research Center, the NC Brain Registry, and, of course, Duke University School of Nursing.

They're great partners doing great work.

Please consider supporting them.

And, finally, lastly, I have a shameless plug.

Don't forget to watch "NC Impact" Friday nights at 730 on PBS North Carolina and on the free PBS app.

We take a look at statewide issues such as Alzheimer's and supporting caregivers, so be sure to check that out as well.

But thanks again for joining us.

Stay safe and well, and, everyone, have a good night.